Although HIV rates are declining among youth, they are still one of the most vulnerable groups at risk of infection. The U.S. Centers for Disease Control and Prevention reports that in 2015, people ages 13 to 24 accounted for one in five new HIV diagnoses. But an infographic recently released by the AIDS Services Foundation Orange County (ASF) revealed an even more startling statistic: tens of thousands of teens and young adults living with HIV don’t know their status.
The infographic, based on CDC data, revealed that 51% of teenagers and young adults with HIV were undiagnosed as of 2013. In numbers, that translates to more than 31,000 out of an estimated 60,900 youth living with the disease. According to the CDC, people ages 13 to 24 represent the age group with the highest rate of undiagnosed HIV.
The ratio of undiagnosed youth has dropped since 2010 thanks to awareness, education, and breakthroughs in HIV care. That year, almost 60% of people 13 to 24 years old didn’t know their status, according to the CDC. But despite this decline, the percentage is still too high, says ASF’s CEO and executive director Philip Yaeger.
“Things have gotten a little better, but still more needs to be done,” Yaeger tells Teen Vogue.
Public health officials have attributed the high rate of youth living with undiagnosed HIV to a number of prevention challenges, including low rates of testing. According to the CDC, only 10% of high school students had been tested for HIV in 2015, and just 21% of young bisexual and gay men — the population most at risk of infection — were screened for the disease.
Advocates say teenagers and young adults face multiple barriers that keep them from getting tested for HIV. Poverty, lack of healthcare access, inadequate sex education, and stigma prevent youth from using the tools they need to learn their status and seek out care, further compromising their health.
And these obstacles, which are pronounced for youth of color and trans youth, all intersect, advocates say. An area clinic may offer free HIV screening, but for a teenager living in poverty in a small town, “area” may mean 40 miles away because their local Planned Parenthood site shut down. Or they may live in a state that promotes misleading and inaccurate abstinence-only sex education, so they’re unaware of the HIV testing resources available to them. Or they may have access to a doctor, but the fear of broaching the subject of getting tested may be too great.
“If they’re not comfortable talking to their primary care physician about HIV, that’s a barrier,” Yaeger says. “That’s a huge barrier.”
HIV stigma and poor sex education are key contributing factors in low testing rates among all ages, but especially among young people ages 13 to 24. A 2012 national survey conducted by the Kaiser Family Foundation found that 84% of people ages 15 to 24 believe there continues to be a lot or some stigma around HIV/AIDS. That same survey discovered that three out of five youth surveyed reported rarely, if ever, hearing about HIV/AIDS or other STDs in the news, and 39% reported that HIV or other STDs hadn’t come up in everyday conversation in the last year.
Geography also plays a role in the number of undiagnosed teens. According to the ASF infographic, the South has the highest concentration of HIV cases in the United States — particularly among people of color. And as the CDC notes, most southern states are behind onHIV prevention and treatment compared with other regions, both because of a lack of funding and restrictive healthcare policies.
“HIV is an epidemic that’s driven by classism and racism in terms of infrastructures that prevent access to healthcare,” Louis Ortiz-Fonseca, Advocates for Youth’s director of LGBT Initiatives, tells Teen Vogue.
Advocates say that reducing stigma and obstacles to medical care would help increase rates of diagnoses among youth significantly. It would also mean more teenagers and young adults living with HIV could get and stay in care. A growing body of research has shown that, when taken regularly, antiretroviral therapy (or ART) can suppress a person’s viral load to the point that it is undetectable, which makes the risk of transmission negligible.
“This is just a miraculous breakthrough because it means that people now have lives where they can live as long as anyone else,” says Susan Kegeles, founder of the Mpowerment Project, a model community-building and HIV prevention program designed for young gay and bisexual men. “They can live symptom free. They’re no longer infectious to anyone else.”
That’s why it’s crucial for advocates to help improve access to HIV screenings, as well as for youth to undergo routine tests, Kegeles tells Teen Vogue. A teenager who knows their status could, with the right support and access to healthcare, start treatment quickly “so that their health is the best it can possibly be,” says Kegeles, who also serves as co-director of the Center for AIDS Prevention Studies at the University of California—San Francisco.
One of the ways to achieve this goal is to incorporate HIV prevention and treatment into general wellness instead of treating the disease like a unique specialty, says Shannon Weber, founder of Please PrEP Me, an online directory that lists over 230 clinics in California that provide pre-exposure prophylaxis (PrEP), the HIV prevention method that requires a daily pill to reduce risk of infection. When doctors include HIV screening as a routine part of check-ups, a young person would have access to information, testing, and treatment that may not be available otherwise — or that they’re afraid to seek out.
“Nobody thinks they’re at risk for HIV regardless of what they’re doing, and then you have these layers of shame,” Weber tells Teen Vogue. “So it has to be integrated into a wellness package.”
But this should be done through a trauma-informed lens, Ortiz-Fonseca notes. A teenager’s health needs are not separate from their concerns over housing or food, yet they’re often treated as separate issues. This is despite research that shows housing stability and rates of HIV testing actually intersect.
“Approaches around HIV tests have not necessarily been from a holistic perspective,” he says. “That’s one of the reasons that keeps young people from knowing their status.”
Still, breaking down barriers to healthcare access will take more than relying on best practices. Ortiz-Fonseca says nonprofits should make a conscious effort to include more young people in their work. After all, teenagers and young adults are directly affected by the programs older advocates develop, so listening to and incorporating youth voices would make those efforts more effective.
More so, teenage activists have far less to work with, which leads them to be much more creative in their peer-to-peer work, he adds. That often means thinking beyond conventional advocacy methods.
“Young people are creating these systems that work best for them, and with close to no resources other than their commitment to support each other,” Ortiz-Fonseca says. “If people listen to young people, they would be inspired to step outside of the normal.”
Written by Annamarya Scaccia / Teen Vogue